Original Article
Rev. Latino-Am. Enfermagem2015 Mar.-Apr.;23(2):192-9 DOI: 10.1590/0104-1169.3424.2542
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Corresponding Author: Meiry Fernanda Pinto Okuno
Universidade Federal de São Paulo. Escola Paulista de Enfermagem Rua Napoleão de Barros, 754
Vila Clementino
CEP: 04024-010, São Paulo, SP, Brasil E-mail: [email protected]
1 Paper extracted from doctoral dissertation “Quality of life, sexuality and epidemiological profile of older people with HIV/AIDS”, presented to
Universidade Federal de São Paulo, São Paulo, SP, Brazil.
2 PhD, RN, Escola Paulista de Enfermagem, Universidade Federal de São Paulo, São Paulo, SP, Brazil.
3 MSc, Physician, Universidade Federal de São Paulo, São Paulo, SP, Brazil.
4 Doctoral student, Universidade Federal de São Paulo, São Paulo, SP, Brazil. RN, Escola Paulista de Enfermagem, Universidade Federal de São
Paulo, São Paulo, SP, Brazil.
5 PhD, RN, Escola Paulista de Enfermagem, Universidade Federal de São Paulo, São Paulo, SP, Brazil.
6 PhD, Adjunct Professor, Escola Paulista de Enfermagem, Universidade Federal de São Paulo, São Paulo, SP, Brazil.
Quality of life, socioeconomic profile, knowledge and attitude toward
sexuality from the perspectives of individuals living with Human
Immunodeficiency Virus
1Meiry Fernanda Pinto Okuno
2Gisele Cristina Gosuen
3Cássia Regina Vancini Campanharo
4Dayana Souza Fram
5Ruth Ester Assayag Batista
6Angélica Gonçalves Silva Belasco
6Objectives: to analyze the quality of life of “patients” with Human Immunodeficiency Virus and
relate it to their socioeconomic profile, knowledge and attitudes toward sexuality. Method:
cross-sectional and analytical study with 201 individuals who are 50 years old or older. The Targeted
Quality of Life and Aging Sexual Knowledge and Attitudes Scales were applied during interviews.
Multiple Linear Regression was used in data analysis. Results: dimensions of quality of life more
strongly compromised were disclosure worries (39.0), sexual function (45.9), and financial
worries (55.6). Scores concerning knowledge and attitudes toward sexuality were 31.7 and
14.8, respectively. There was significant correlation between attitudes and the domains of overall
function, health worries, medication worries, and HIV mastery. Conclusion: guidance concerning
how the disease is transmitted, treated and how it progresses, in addition to providing social and
psychological support, could minimize the negative effects of the disease on the quality of life of
patients living with the Human Immunodeficiency Virus.
Introduction
The Joint United Nations Programme on HIV/AIDS
(UNAIDS) reports that more than 34 million people live
with HIV worldwide: 30.7 million are adults and 3.4
million are younger than 15 years old, while 16.7 million
are women. A total of 1.4 million are in Latin America,
350,000 of which live in Brazil, while estimates show
that 250,000 Brazilians are infected but do not know
that they are(1).
In 2010, in Brazil, the incidence of the disease was
higher among individuals aged between 40 and 49 years
old, representing 24.8% of the cases, though an increase
has been observed among individuals aged from ive to
12 years old and those 50 years old or older(2).
The growing number of 50 years old or older
individuals living with HIV may be related to the fact
they acquire the virus at an older age; they do not
realize they may acquire the virus, probably because,
as the disease came to notoriety, it was more associated
with young individuals, intravenous drug users and
homosexuals; and to the fact that medications improve
sexual performance and favor the establishment of new
and multiple sexual partnerships(3). Additionally, some
of the young population who became infected is now
aging. Due to the eficacy of the antiretroviral therapy,
there has been an increase in the number of individuals
50 years old or older with the disease(3).
Even though sexuality is a basic need and an
aspect of humankind that cannot be separated from
other aspects of life, regardless of age, the aging
process leads to some physical changes that sometimes
affect one’s ability to practice sex and have such
pleasure with another person(4). The knowledge of the
patients addressed in this study concerning sexuality
was associated with myths and changes in the sexual
functioning of individuals as they age.
Sexuality, as an important aspect of life, can lead
to changes in the quality of life over time(5). Arguably,
information concerning sexuality contributes to a healthy
and safe sexual life in old age(6).
One’s attitude toward sex is a result of social and
sexual experiences(6). Choosing a sexual partner, the
frequency with which one practices sex, good sexual
life, and interest in sex are positively associated with
the health of adults and elderly individuals and may be
relected in a positive attitude toward sexuality and the
prevention of diseases(7).
A positive attitude among elderly individuals toward
sexuality may favor an understanding that sexual
activity is a natural process and that the sexual function
remains throughout life(8). The individuals interviewed
in this study were assessed as to whether they had a
positive attitude toward sex in old age or not; in Brazil,
elderly individuals are those 60 years old or older(9).
The presence of HIV/AIDS, as well as symptoms and
complications associated with the disease, negatively
affect the quality of life (QoL) of those living with the virus.
Additionally, several sociodemographic, clinical, and
psychosocial factors have been reported in the literature
as variables that can impact the QoL of these individuals
(10-11). In general, QoL dimensions include physical,
psychological, social, interpersonal, environmental, and
spiritual aspects that enable complementing morbidity
and mortality models traditionally used to assess the
impact of a given disease. In this context, assessing
factors that interfere in the QoL of people living with
HIV/AIDS is an important marker of disease and also
important to implementing therapeutic interventions
among this population(12).
Identifying potentially modiiable factors of QoL is
essential to making medical decisions, implementing
health care measures and optimizing the use of
resources in healthcare services to improve the well
being of people living with HIV/AIDS(10).
Since variables that affect the QoL of patients with
HIV/AIDS have not yet been completely identiied, this
study’s objectives were to analyze the quality of life of
“patients” with HIV and relate it to their socioeconomic
proiles, knowledge and attitudes toward sexuality.
Method
This epidemiological, cross-sectional and analytical
study was conducted in the outpatient clinic coordinated
by the Infectious and Parasitic Diseases course
administered at UNIFESP, between May 2011 and March
2012. A total of 201 female and male individuals with
HIV/AIDS were included in the study, provided they
were aged 50 years old or older, presented no cognitive
deicit, were monitored by an infectious disease specialist, and conirmed their consent by signing free
informed consent forms. Those who did not meet the
inclusion criteria were excluded from the study.
We used a stratiied random sampling method
proportional to the average number of patients 50
years old or older, receiving care in the six months that
preceded the study. The sample size computation took
into account a degree of conidence equal to or greater
such as age, gender, education, marital status,
occupation, physical exercise, time since the disease
was diagnosed, how the individual was infected, and
comorbidities. The results showed a need to include 201
patients to achieve the desired objectives.
A structured questionnaire was used. It addressed
information on age, gender, education, marital status,
occupation, exercise, time since the disease was
diagnosed, how the individual became infected, and
comorbidities. Economic status was classiied according
to Critério de Classiicação Econômica Brasil [Economic
Criteria Classiication], in which the inal score, which
represents an economic class (from A to E), is the sum
of points concerning level of education and amount of
consumer goods the individual has at home(13).
The Targeted Quality of Life Instrument (HAT-QoL)(14)
was used. It is composed of 34 items addressing nine
dimensions: overall function, life satisfaction, health
worries, inancial worries, medication worries, HIV
mastery, disclosure worries, provider trust, and sexual
function. The individual is instructed to consider his/her
QoL in the last four weeks and answers are presented
on a ive-point Likert scale: “all the time”, “most of
the time”, “some of the time”, “a little of the time” and
“never”. The scores range from zero (worst situation) to
100 (best possible situation).
The Aging Sexual Knowledge and Attitudes
Scale (ASKAS)(15) was also used. It is composed of
20 questions addressing the construct “knowledge”,
ranging from 20 to 60, and eight questions addressing
“attitudes,” which range from 8 to 40. The options for
answers to the knowledge questions include: true (one
point); false (two points); and do not know (three
points); the lower the score, the higher one’s knowledge
regarding sexuality in old age. The options for answering
the questions addressing attitudes include: strongly
disagree (one point), partially disagree (two points),
do not agree or disagree (three points), partially agree
(four points), and strongly agree (ive points). The lower
the score, the more favorable is one’s attitude toward
sexuality in old age.
The patients were invited to participate in the study
when they visited the clinic for routine exams or medical
appointments. If they consented, they were individually
interviewed in a private outpatient clinic. The researcher
read the instruments’ items only once and the interviews
lasted 40 minutes, on average.
Descriptive statistics was used to present the
participants’ sociodemographic, economic, and
clinical-epidemiological characterizations, comorbidities,
exercise patterns, and the results of the ASKAS.
Average, standard deviation, median, minimum and
maximum were computed for the continuous variables,
while frequencies and percentages were computed for
categorical variables.
A Linear Regression model was used to verify which
independent variables (sociodemographic, economic,
clinical-epidemiological, comorbidities, and exercise)
better related with each domain of the HAT-QoL and the
ASKAS. Multiple Linear Regression (stepwise regression)
was then performed to select the set of variables that
better explained the dependent variables (HAT-QoL
and ASKAS). Analyses were performed using Statistical
Package for the Social Sciences, version 1.9, and a level
of signiicance of p<0.05 was used.
This study was approved by the Institutional Review
Board at the Federal University of São Paulo (UNIFESP)
No. 0182/11.
Results
The patients’ ages ranged from 50 to 74 years old;
the ratio was 1.75 men for each woman; 67.7% did not
have a stable partner; 9.5% had no income; only 14.4%
had a bachelor’s degree; and most (61.7%) individuals
belonged to economic classes C, D, or E. Time since
diagnosis as disclosed ranged from six months to
30 years, and heart diseases were the most frequent
comorbidities (34.3%), as shown in Table 1.
Table 1 – Sociodemographic, economic and morbidity
characteristics of patients living with HIV/AIDS. São
Paulo, SP, Brazil, 2012
Characteristics n = 201 %
Age (years)* 56 (50 - 74)
Gender†
Male 128 63.7
Female 73 36.3
Race†
Caucasian 136 67.7
Afro-descendant 27 13.4
Mixed 38 18.9
Marital status†
Single/Divorced 103 51.3
Married 65 32.3
Widowed 33 16.4
Occupation†
Retired/Pensioner 106 52.7
Employed 76 37.8
Unemployed 10 5.0
Homemaker 9 4.5
Characteristics n = 201 %
Education†
Illiterate/Incomplete elementary school 64 31.8
Middle school 44 22.0
High school 64 31.8
Bachelor’s degree 29 14.4
Individual monthly income (Brazilian Real)* 1200 (0 - 9000)
Economic Class†
A + B 77 38.3
C + D + E 124 61.7
Time since the infection was diagnosed (years)*
12 (0.5 - 30.0)
Comorbidities†
None 59 29.4
Heart diseases ‡ 69 34.3
Retinopathies 49 24.4
Neoplasia 24 11.9
*Median (maximum-minimum) †Absolute frequency and percentage
‡Heart diseases: hypertension, peripheral vascular disease, and arterial, and coronary artery disease.
Table 2 shows that the most compromised domains
of the QoL scale were disclosure worries (39.0), sexual
function (45.9), and inancial worries (55.6). The
average scores of the ASKAS’ knowledge and attitudes
domains were 3.7 and 14.8, respectively, showing that
this population has knowledge and attitudes favorable
to sexuality.
Table 3 shows that some sociodemographic,
economic and clinical characteristics of elderly individuals
with HIV/AIDS favored diverse QoL domains. Exercising,
having knowledge of the disease for a longer period,
belonging to economic class A or B, having a higher level
of education, being unemployed, being aware of how
one acquired the disease, being a man, Caucasian, and
younger than 60 years old were signiicant aspects to
having higher QoL scores.
No variable was signiicantly associated with the
medication worries domain.
Table 4 shows that female and unemployed
patients were those with greater knowledge concerning
sexuality in old age, while those with higher levels of
education and who were younger than 60 years old were
those who presented more favorable attitudes toward
sexuality among elderly individuals (attitudes domain).
There were signiicant associations between the
ASKAS’ attitudes domain and the HAT-QoL’s overall
Table 3 – Variables associated with the HAT-QoL’s domains in the multiple linear regression analysis. São Paulo, SP,
Brazil, 2012
HAT-QoL Variables Coefficient p value R2*
Overall function Exercise (yes x no) 9.28 0.0018 0.0489
Life satisfaction Exercise (yes x no) 7.85 0.0239 0.0465
Longer time since diagnosis (years) 0.58 0.0449
Health worries Longer time since diagnosis (years) 0.81 0.0033 0.0436
Financial worries Economic class (A and B x C, D and E) 13.38 0.0147 0.0303
HIV mastery Education x illiterate 14.05 0.0061 0.0381
Disclosure worries Employed x Unemployed -13.03 0.0013 0.0627
Age (55-59 years old x ≥60 years old) 8.39 0.0425
Provider trust How acquired the infection (know x do not know) 11.41 0.0262 0.0498
Education x illiterate -9.85 0.0321
Sexual function Male x female 25.00 0.0001 0.1627
Age (55-59 years old x ≥60 years old) 16.99 0.0065
Race (Caucasian x non-Caucasian) -15.79 0.0127
Economic class (AB x CDE) 12.98 0.0349
*Coeficient of determination. Stepwise was the method of selection used.
Table 2 – Average values of the HAT-QoL’s and ASKAS’
domains among patients living with HIV/AIDS. São
Paulo, SP, Brazil, 2012
Domains Average (± standard deviation)
HAT-QoL (n= 201)
Overall function 79.39 (20.9)
Life satisfaction 71.9 (24.4)
Health worries 83.2 (22.9)
Financial worries 55.6 (37.5)
Medication worries 88.7 (17.3)
HIV mastery 77.8 (33.6)
Disclosure worries 39.0 (27.3)
Provider trust 72.2 (30.7)
Sexual function 45.9 (43.5)
ASKAS
Knowledge 31.7 (6.7)
Attitude 14.8 (6.8)
function, health worries, medication worries, and HIV
mastery. The ASKAS’ knowledge domain, however, was
not signiicantly associated with any HAT-QoL domains,
as shown in Table 5.
Table 5 – Multiple linear regression analysis between
the ASKAS’ attitude domain and the HAT-QoL’s domains.
São Paulo, SP, Brazil, 2012
HAT-QoL p value R2*
Overall function 0.0363 0.0218
Health worries 0.0010 0.0527
Medication worries 0.0091 0.0346
HIV mastery 0.0017 0.0483
*Coeficient of determination. Stepwise was the method of selection used.
Discussion
Some characteristics of this study’s population such
as age, being mostly men, a low level of education, and
low purchasing power are similar to the results found in
another study conducted in Porto Alegre, RS, Brazil with
HIV seropositive patients 50 years old or older, though
most were employed and 41.9% were either married or
lived with a partner(16).
The scores of the HAT-QoL’s domains were as
follows: disclosure worries (39.03); sexual function
(45.96); and inancial worries (55.64). These scores were
also similar to those found in studies conducted in Porto
Alegre and a city in the interior of São Paulo, showing that
regardless of the place of residence, the aspects of QoL
most compromised are common among patients(11,16).
Disclosure worries, the domain with the lowest score,
may relect the stigma and discrimination experienced by
individuals with HIV/AIDS, which constantly generates a
negative impact on people’s QoL. In the absence of any
intervention to ight stigmatization, these individuals will
probably report dissatisfaction with life, evidenced by a
decreased level of pleasure with life and social life(17).
The compromised sexual function among this
study’s patients may be explained, in part, by the routine
use of condoms, fear of rejection, of HIV superinfection,
that the virus gets stronger, and fear of transmitting the
virus, lack of trust in the partner, lack of sexual desire,
and not considering sex to be an important part of life.
Many participants of another study reported that HIV
affected their sexual function(18).
Lower QoL portrayed in the inancial worries domain
is probably related to the low income of individuals with
the disease, which makes survival more dificult. QoL
is closely linked to socioeconomic matters and social
inclusion(10).
This study’s interviewees presented average scores
of 31.7 on the ASKAS concerning knowledge of sexuality
among elderly individuals, which ranged from 20 to
60, i.e., 29.4% of the total score. They scored 14.8 on
the scale concerning attitudes toward sexuality in old
age, which ranges from 8 to 40, i.e., 21.4% of the total
score. An American study conducted with gynecologists
showed average scores of 49.0 for theASKAS’ knowledge
domain. Scores for this domain range from 35 to 105,
and the score obtained is equivalent to 20.0% of the
total score. Participants also scored 81.0 in the attitude
domain, the scores of which range from 26 to 182,
i.e., they scored 35.2% of the total score. This result
shows that patients with HIV addressed in this study
presented lower levels of knowledge and more favorable
attitudes toward the sexuality of elderly individuals
when compared to American physicians(19).
The favorable attitudes toward sexuality in old age
found among these individuals suggest they are sexually
active; however, better knowledge of sexuality does not
mean less risk of infection and educational practices are
required to prevent the spread of the disease(7).
The multiple linear regression analysis performed
between the HAT-QoL’s domains and other variables
shows that exercise is associated with higher scores for
overall function and life satisfaction. The relationship
between exercise and overall health has been positively
reported in recent decades among individuals with
the virus. Physical exercise may positively inluence
Table 4 – Sociodemographic variables associated with the ASKAS’ domains in the multiple linear regression analysis.
São Paulo, SP, Brazil, 2012
ASKAS Variables Coefficient p value R2*
Knowledge Male x Female -4.81 <0.0001 0.1436
Employed x Unemployed -1.96 0.0359
Attitudes Education x illiterate -2.82 0.0066 0.0638
Age (55-59 years old x ≥60 years old) -2.15 0.0374
immunological factors, increasing the production
of natural antibodies, which in turn, can delay the
progression of HIV/AIDS(20).
Life satisfaction and health worries were domains
with higher average scores that were associated with
a longer period since HIV was diagnosed. One study
conducted with seropositive individuals aged 50 years old
and older reports that most react negatively when they
received the diagnosis, though aging with HIV implied
self-acceptance, wisdom, and a positive attitude toward
life, essential aspects to maintaining life satisfaction and
QoL(18).
Patients belonging to economic classes A and B
scored higher in the inancial worries domain, showing that inancial support is a positive aspect for QoL. The
HIV epidemic is associated with a higher number of
women and young individuals, internalization, aging
and impoverishment(3). Social exclusion triggered by
being HIV positive leads individuals to experience
social vulnerability. People with the disease who have
a low level of education and low purchasing power
have limited access to health, education, housing
and food(17). A low level of education also inluences
one’s occupational options. Low income and poor
socioeconomic condition inluence the access of people
living with HIV/AIDS to preventive measures and
integral healthcare(11).
The HIV mastery domain presented signiicantly
higher scores among those with higher levels of
education. Another study reports that lower education
levels among infected people 50 years old or older
hinders access to essential AIDS-related information,
such as knowledge regarding antiretroviral medications
that can control the disease. This information indicates
that a low level of education may interfere in adherence
to antiretroviral medication, as it inluences one’s
understanding of the importance of using medications
and accessing the treatment(21).
Even though the average score obtained in the
disclosure worries domain was low, it was better among
unemployed individuals and those younger than 60
years old. Working individuals obtained the worst
scores, possibly due to fear of discrimination and the
possibility of losing their jobs. Many employers do not
hire seropositive individuals due to prejudice, to the side
effects caused by antiretroviral medications that may
interfere in their productivity and to patients’ needs to
miss work days for consultations and exams(17).
Social moral overload that patients experience
seems to worsen with age. Another study conducted
with elderly individuals with HIV/AIDS identiied that
the diagnosis impacted the individuals’ affection-bonds,
family ties and friendships. Fear of rejection was a major
factor inluencing the decision whether or not to disclose
the diagnosis to the individuals’ social circles(4).
Being aware of the forms of transmission and a
higher level of education were associated with higher
scores on the HAT-QoL’s provider trust domain. Higher
levels of education may favor understanding about
the disease and medication therapy, which is relevant
for treatment adherence. Another study reports that
individuals who do not adhere to the use of antiretroviral
medication had lower levels of education than those
who adhere to the treatment(19). The lower scores found
regarding the provider trust domain, may be explained,
in part, by the fear some patients hold of being judged by
healthcare providers and associated with homosexuality,
drug users, and sex workers(22). The sexual function
domain showed that being a Caucasian man belonging
to economic classes A or B was associated with higher
scores. The maintenance of affective-sexual relationships
is essential in the lives of individuals with HIV/AIDS as a
contribution to better QoL(11). Higher levels of education
may be associated with the maintenance of sexual
desire in the later stages of adult life(23).
The study showed that some sociodemographic and
clinical characteristics of patients with HIV/AIDS favored
diverse domains of QoL. Physical exercise, being aware
of the diagnosis for longer periods of time, belonging
to economic classes A or B, having higher levels of
education, being unemployed, and being aware of how
the disease was acquired, being male and Caucasian,
and younger than 60 years old were signiicant aspects
to maintaining higher QoL scores.
The results of another study conducted with HIV/
AIDS patients corroborate this study’s indings and
indicate variables that were positively associated with
the domains of QoL: higher education and income(11).
According to the ASKAS, women and unemployed
individuals addressed in this study presented greater
knowledge concerning sexuality in old age. Women in
late stages of adult life remain interested in sexual life,
feeling physically and mentally well to have sex, and in
inding information and help concerning sexuality on the
internet(24).
Unemployed people perhaps presented greater
knowledge regarding sexuality due to having more time
to seek public health services. Employed individuals
hours of work and those of the health services are not
always reconcilable for working individuals(25).
The interviewees who presented a better attitude
toward sexuality were those with higher levels of
education and who were younger than 60 years old.
Another study reports that individuals with higher
educational levels assigned greater importance to sex
in their relationships with their spouses, showing that
education seems to play an important role in people’s
attitudes toward sexuality(23).
Sexuality in old age is a subject neglected by society,
healthcare providers, and elderly individuals themselves
as if love and even sex are no longer within the array of
interests of those of advanced age(5). It may be one of the
reasons patients older than 60 years of age presented a
less favorable attitude toward sexuality in old age.
More favorable attitudes toward sexuality were
associated with the domains of overall function, health
worries, medication worries, HIV mastery and addressed
in the HAT-QoL in the multiple linear regression analysis.
No studies related the HAT-QoL and the ASKAS, which
hindered the comparison of results.
Conclusion
The variables of physical exercise, long period
since diagnosis, better economic conditions, higher level
of education, being unemployed, being younger than
60 years old, being aware how transmission occurred,
being a man, and being Caucasian were associated with
one or more of the HAT-QoL’s domains and increased
its scores. Women and unemployed individuals had
greater knowledge concerning the sexuality of elderly
individuals, while patients with higher education levels
and who were younger than 60 years of age showed
more favorable attitudes toward sexuality in old age.
Signiicant association was found between the HIV-QoL’s
domains overall function, health worries, medication
worries, and HIV mastery with the ASKAS’ attitude
toward sexuality in old age domain.
The implementation of effective measures to
prevent diseases, protect and maintain the QoL of
people who age while having HIV/AIDS is necessary and
urgent. Assessment and nursing interventions such as
guidance concerning routes of transmission, treatment
and how the pathology progresses, in addition to social
and psychological support, could minimize the negative
effects of the disease on the QoL of people living with
HIV/AIDS.
This study’s limitations include the fact that the
participants were selected from a limited area of São
Paulo and most were men. Men and women may have
different experiences with HIV, which would impact QoL
differently. This study’s results cannot be generalized
because they refer to speciic characteristics of a
given Brazilian region, although these results do allow
building a perspective on QoL and its relationship with
socioeconomic aspects, knowledge and attitudes toward
sexuality in old age of individuals with HIV/AIDS. It can
also provide useful information to support health policies
concerning prevention and treatment.
Nursing assessments and interventions such as
guidance regarding forms of transmission, treatment of
and the progression of HIV/AIDS, in addition to social and
psychological support, may minimize negative effects of
the disease on the QoL of HIV-positive individuals.
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Received: Aug 2nd 2013
